Great Expectations…OK Zero Expectations

Something funny happens when you become chronically ill. Ready? You become totally shitty at fulfilling the roles that probably came easy and natural to you before The Grand Interruption. Parent, kid, sibling, husband, wife, friend–all of those roles are going to suffer, because you’re simply unable to do the things you could before. Your capabilities become limited, your time becomes precious and cornered, and your ability to meet your and other peoples expectations will fall short, again and again. I admit it fully, I’m in general an unreliable source of help, or maybe just unreliable period. And if you don’t think that stabs me straight in the ego, then try saying out loud “I’m a human wasteland” and see how it feels. Because that’s about how it feels.

But we have to be fair, to ourselves and others. We can’t hold ourselves to the same standards as before, especially when we don’t have the same working parts. And we have to remember that the adjustments we make are not adaptations that we alone have to get used to. All those people for whom we provided some kind of role, they’re going to be affected too. They’re going to get exhausted, be disappointed, feel the pain of you not being who you used to be, just as you, the sick person will. I don’t know what it’s like to be a friend or a family member of Mary Gelpi, but I know that I begin 90% of my texts, emails, and conversations with an apology–because I couldn’t make it, I’m responding so late, I won’t be able to attend (insert anything important) I’m sure they become as tired of hearing it as I become of saying it. It’s exhaustive, saying sorry all the time. It’s probably tiresome to be on the other end of it too. But you are sorry, you don’t want to be this crappy of a friend or sister or girlfriend–and while being sick is nobody’s fault, it is the reality and it’s going to be painful. Learning to redefine our roles must be a lifelong process, I’m not sure. I just know I’m still learning.

Maybe a part of being proactive in that transition is becoming more honest and realistic with myself about what I’m able to do. I don’t deny that I suffer from wishful thinking, and probably make commitments I shouldn’t. Letting people know that I can’t be counted on, which is still hard to say, would probably let fewer people down less often. They have to know what to expect, which is unfortunately very little, but it’s up to us to fill them in.  Sometimes you get so busy being sick, you forget to communicate. You forget that people don’t know, or remember. Or you give up on telling them because it can feel repetitive and pointless, but I don’t think that’s true in reality. If I’m not honest about what I can do, out of fear or pride or whatever it is, I will let people down because they won’t know where the line is

I’ve had to face the reality in the last few years that there is no such thing as “solid plans” for me, or relying on myself 100% to be able to follow through with them. Every plan basically has an invisible “tentatively” written behind it. Last month I rescheduled 3 doctors appointments because I was too sick to make it. I have no idea how I’ll feel one day to the next, and that takes constant adjustment. I remember my whole family coming to visit last summer, they were sitting around my living room trying to figure out who could babysit the kids while they went to the French Quarter for the day. I remember sitting in the room saying Guys, I’m right here, I’ll watch them. I was actually, momentarily, offended that they didn’t consider me. Then someone said Mary, you can’t even do your dishes right now. Oh yeah, whoops. I forgot my own unreliability! As Louis C. K. would put it, I’m a non-contributing zero. Hah, yes. That sounds right. I had to laugh that even I couldn’t remember that I just can’t be counted on right now, and as much as that can be a kick in the gut to admit, it’s sort of silly to take it personally. If you’re sick, you’re sick–just admit it and keep moving.

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“Sweetie, can you do the dishes?” “No dad, I’m a non-contributing zero.” “Oh, right. Well, we love you anyway!” “Thanks guys.” “OK now get out of the way so we can do the dishes.”

 

I said in the beginning that being sick makes us crappy at fulfilling our roles, and in the traditional sense that may be true. But it also remains that when you’re sick, you just can’t do what you can’t do. If you don’t have legs, you can’t walk. It’s toxic to compare yourself to an old life where all your faculties were in place, to a new one where half your parts aren’t working. But being sick forces you to redefine your role, and I think there are ways to use your new way of “being” in the world and still be functioning in your respective roles. It’s not as is being sick effects your ability to love. If anything it’s made me love deeper, made me more grateful, and made the friendships that have lasted grow in certain ways. Still, I fail a lot, and many times it’s because I’m a flawed human being, not a chronically sick person. So I try to be extra cautious of both. Like most things being sick teaches, awareness seems to be key.

I’m always asking the questions that I think everyone is asking; am I doing the right thing, am I good person, what am I meant to do with my life? My circumstances? We all have our different sets of assets and vices, and it’s a balancing act trying to find the middle part where your feet are solid on the ground. Becoming chronically sick picks up your lifeless body and throws it upside down and backwards so that when you land you hardly know which way “up” is. It’s a puzzle, a maze, finding your way, but not impossible. The guru’s are always asking “How are you going to use what’s been given to you?” I always looked at that question as asking how I’d use the gifts I was given–the positive things in my life. Now I realize the question is far deeper than that…I think more often they mean, What will you do with your pain? How will you use this Extreme Disturbance to do better? Well hell, I don’t know. I just know that all we can do is try. Many times that means living with the mystery and not the answer. Also not easy to do.

I think it’s possible to use the condition of being sick in positive ways and to also maintain your roles by newly defining them. It seems to require incredible creativity and ingenuity, and I’ve certainly suffered from a lack of those many times. But I know there are ways to transform your old ways into new ones that are equally rewarding but not costly or impossible. I wouldn’t have confronted these conundrums if I hadn’t become sick and lost control of all the things I used to think of as mine. It has at least opened me up to the possibility of higher consciousness, and compared to who I was, I know the Mary without control has a better grasp on reality, is more compassionate, a better listener, less proud and more forgiving. I hope that doesn’t sound like bragging, I just think it’s good to examine the gifts that our so-called shitty circumstances can uncover. I obviously have a long way to go, but I know being sick has opened up deeper channels for me, and transformed the way I see the world and being in it.  Maybe it’s selfish, but I learned forgiveness by having to forgive myself first–for being where I was, for the things I could not do, for always thinking I should be doing better or further along. I had to let the unrealistic expectations go, and forgive myself for not reaching them.

I remember in my first serious relationship, which wasn’t until college, he frequently complained that I never apologized. My response was always “But that’s because I’m not the one who did anything wrong.” Holy cow, I’m the worst! It took years of learning humility and grace that being and saying sorry is a virtuous thing. It means recognizing your wrongdoing and at least becoming temporarily conscious of things you can do better. When you have a fight with someone, sometimes it’s because one person flat-out messed up. But many times, it takes two to tango, and talking things out, forgiving, letting go…all of it is stuff that moves both people forward. I don’t say this pretending as though I’ve mastered the art–I only know it’s there, it’s a choice. And it’s a good thing to know. I don’t know what or who I’d be like, were I still in my structured world, independent, living my life. But I know I enjoy the view from where I am now much more. I almost don’t look at life as mine anymore–I’m not sure whose it is. I’m still the driver, but it’s definitely a borrowed car.

Anyway, I guess this is your healthy reminder to keep those expectations low! And be grateful for the people who love you despite your human-wastelandednesss. They obviously see that you’re still cool despite being sick. And when people ask you to do something you’re incapable of, remind them with a smile: “I’m a non-contributing zero!” Then find new ways to contribute. :)

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“Son, you’re a non-contributing zero, and that’s OK.”     “…Thanks Dad.”

Health, Happiness, New Expectations

 

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Brain Not Work So Good

I feel this modern artwork both describes what it feels like in my brain recently and also represents the clustershit that my writing has been. At least spaghetti brain can look pretty. The writing is a mess.

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I say the as if it’s someone else’s. My writing. Me. I’m doing that thing where I start out simple, on course, paving a promising path toward something that makes me think but that I can also wrap up and understand in the end. There’s never a lull for words or ideas. They pour out–I have a lot of time to think them up. When I’m not writing them in my notebook or typing them on my phone I’m usually just thinking of nice sentences in my head. I’m mind-writing. Just watching sentences fall into place mentally, perfectly, and I actually feel relief when these sentences are formed. The kind of relief you feel when you  get in your car the first time after you’ve cleaned it, and it was dirty for a long time before. It happened on the way home from the pharmacy yesterday. Sadly, I remember the relief more than the sentences or ideas. I tell myself I’ll remember this later, but I hardly ever do. On rare and momentous occasions, if I just sit down and start to work it will pop out like a wine cork. Ah! There it is. But I hesitate to think how much has gone un written because I wasn’t near a pen or a computer, or that I actually was but just didn’t put the effort into getting it down. Owell. That’s kind of a self-important thought. And, I guess we have to assume the work we never made, lost now somewhere between sleep and consciousness, was probably crap.

The words pour out not because I’m FULL of words and ideas, but because I have no requirements. Few expectations, no deadlines. No assigned topics. And no financial incentive. It’s just a hobby that I treat like a job.  Except that I’d be fired by now and there’s no 401K. Maybe I have too much freedom, so the meandering and circling is just too easy to do. I struggle because it starts off clean, on track with a promising topic and flows naturally in one direction. Then somehow it turns into the literary version of a flying cockroach, darting around clumsily in different directions and you don’t know where it’s gonna land next and you know when it gets killed it will make a crunchy sound. Sorry scratch the last part. I don’t know what it is. I like the words and concepts emerging,they’re just not always in order. Or they’re crap.

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Me Writing Crap

I know this will sound incredulous to some, but when I’m in a crash my brain starts to stutter and cloud way more than usual. In the past I’ve mostly been able to avoid the cognitive effects at least when it came to my writing. But I’ve been working on this post since Thursday. I know I know, easy to blame shortcomings on the illness. But the only reason I feel it is effecting me this time is because that reading stutter returned on Friday too, having to reread sentences over and over, and then just not remembering an entire page and having to start over. Luckily I rested mostly on the couch while Monty quivered near me at the sound of America’s birth, and two friends brought me food! It was nice. Yesterday I was more clear headed reading wise, and able to finish my latest read, The Invention of Wings, which was really great. There’s a lot of good little nuggets in there. And I was surprised and inspired to learn in the authors note, the two main characters were real–born into money and a large plantation in South Carolina around 1830. They would eventually became devout abolitionists and publicly denounce slavery and fight for its end, sharing the cruelty they’d witnessed with their families own slaves publicly, and the world didn’t quite know what to do with them. I enjoy characters like that. It was enthralling and I recommend it.  I need a book club.I just feel like I’d never show up after the first meeting. Anyway my mom says she’ll read it so that’s cool.

Where were we? My writing going in circles, right. I wrote for three hours on Thursday and three hours on Friday and collapsed like a whale on to my couch after both “sessions” and sortof spent the weekend that way. Yesterday when I revisited the words,  I realized I’d written over 4,000 of them, and some made sense and others were in the wrong places and would just require a re-organization of things. But I don’t think my brain can handle it right now. I’m leaning towards spaghetti brain. Noooo. Here, I’ll find another pretty picture.

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Nice, no? That Jaime Rovenstein is really good at creating non-crap. Check out more on her website.

Also, I think this is why agents exist. Why good writers have agents. Proofreading! There’s a word I haven’t heard since college. Maybe that’s what this blog is, one long proof-reading session and one day it will turn into something else that actually pays dollars and cents and I can get an agent or whatever. Or maybe I just need a small person to stand beside me and ring a bell when I’ve written and rambled more than 10 minutes. Now I’m doing that thing where I write about writing. So dumb. I should just write and post. I’m too cautious. I just want it right and I know when it’s not. DING, the bell rings.

I’m going to condense and summarize the absurd amount of words resting on a white page behind this screen. Because I Believe in Brevity!! That sounds like something..a campaign slogan? Specificity is important too. I accomplished neither, so I’m just going to sum it all up. OK. It starts with this sentence.

“I think the time for a typewriter has come.”

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How fun is this dudes art? Check him out.

 

Simple enough right? Then it drops off the edge. I find myself wondering if technology is aiding or prohibiting these things–writing, art, creativity and whatnot. Which somehow brings up the woes of scanning Facebook in the middle of the afternoon, and what those photos are actually capturing. I ask what it is about these photos that leaves me and others sad and yearning as we keep scrolling. (Authenticity, I think is the answer) Then I compare Facebook photos with those JC Penny photos a lot of us took in the 90’s, (dudes, the hair)  and explore physical momentos verses digital ones. Is my generation more or less authentic than the last one? Next I defend Millenials after continual insistence and wagging of the finger I encounter that says Millenials are all lazy, don’t know the value of hard work, we were given too much, have no accountability, and don’t appreciate what we have. This article is a great example which went viral a while ago and a few people posted it on Facebook like “Oh my God, so true.” Uhh, agree to disagree I guess. I agree that your point is false. Then, I deliver a personal conviction that it may not look like it, but I think as humans we actually are progressing, despite a lot of people my parents age saying the world is going to hell in a handbasket. I wonder if their parents said that too. And their parents parents. The fact is we’re still living among the good and evil that has always existed, which leads me to an exploration of that provocatively awesome question David Foster Wallace asked, which is, If we have all the things our parents never had and more, why aren’t we happy?

Let that simmer.

Then I wonder if is this a theme that has repeated itself throughout every generation. Always thinking the next one would surely have it easier. Each one working hard so the  generations after them might have what they never had, and do things they never did, and avoid the hardships that they had to endure. Maybe it’s hard to see that the world is still what it is, and human beings are still who they are, imperfect, after you’ve worked so hard to make it better. Especially if you worked your whole life to do it.

Maybe our notion of happy is off. Or maybe it’s not about happiness. It’s moving forward.

Then the neighbors fireworks got really loud and Monty was quivering below the desk and the writing turned weirdly patriotic. Fast forward from notions of happy and the formulas that work or don’t work, and also the American Dream. Achieving what we’ve historically called the American Dream does not mean achieving happiness. It means achievement. The happiness part is on us. The Dream is living in a country where we’re free to pursue that happiness pretty much any way we want. And I know it’s cheesy, but when you compare this country and our opportunities and freedoms compared to so many other places, we are danged lucky to be born into this one, with autonomy, opportunity and Chronic Fatigue Syndrome! Kidding. I think I have a very good life. I think a lot of people have very good lives and don’t even see it. Anyway this is the part of America that I’ll always be grateful for and humbled by, knowing the generations before me and the blood and sweat and tears that went into creating it, and I guess our job is to make their work and sacrifices worth it. I’m trying! I can’t say whether we’re a happier generation, I don’t know. But I think maybe the more important question is, Are we a more conscious generation? And to that I say, yes.

Now lets go blow stuff up.

Health, Happiness, Happy 6th of July

Hangers On a Ledge 

I run these ideas through my head, trying to piece it together. I try to make sense of a history that began before me and most likely, I’ll never really be able to figure out. Whenever you’re trying to find where things went wrong and how you can make them right again, it can all feel too big, too long ago to find solutions that make sense now. But still, the red part inside of me that stirs as though it has a body that can do anything, tells me this is something we can fix. We can do better–those words, they play over and over.

I travel back in time, the early 80‘s I guess. That’s when it started showing up in different places and on unexpected people, and the powers at large weren’t able to connect the dots. It’s understandable of course–the thing is literally invisible. Maybe the lack of pressure, lack of genuine concern about the disease began there–at a moment in time where it couldn’t be ‘seen’ under microscopes and wasn’t ‘believed’ often by the people who were suddenly sick and then never better. Maybe it was that the thing wasn’t killing anybody. Nothing fatal. Just a flu. “A yuppie flu” they called it. Not only are the sufferers alive, but they don’t even look the part! They aren’t sick on the outside. And rearranging my position in all this, putting myself on the outside looking in at this “movement” of unexplained sick people, I understand how this notion worked against us–how it continues to today. I think of the old adage “What doesn’t kill you makes you stronger.” That may be true in many cases, but I can’t say it applies aptly here. Not in regards to our bodies anyway, which upon the slightest push can fall and not again get up.

What isn’t killing me is not making my body stronger. I am the least strong I’ve ever been. The medicine has caused weight gain that at times has me and my face looking like a bloated pumpkin. It’s hard not to feel at battle with the thing that is intrinsically connected to me, and between us exists a fine line of fighting it and not fighting it at the same time. The whole thing is an honors class in balance. Some days are better than others, and I wonder, am I stronger, or am I just less sick today? There remains a difference. But I’m probably focusing on the wrong area here. No doubt that in our minds, the adage applies. When every day is a battle, beginning with waking up, with sitting up in bed and planting your feet on the ground and taking those first few painful steps to the bathroom, and doing this day after day after day, for some of us years and decades, well then no doubt your mind will grow stronger. It can also grow cynical, it can become   bitter–but many times you’ll surprise yourself with the strength you find and the moments you find it in. If you can keep trying, if you can manage a smile and a laugh, to be happy for other people, to still believe in something good, then certainly you haven’t been killed, and the battle has made you stronger. But that is our mind. Or the soul maybe– An almost contradiction that is both a connected but separate faculty from the body. Refer to the ancient philosphers and you’ll find some disagreement on the subject. I think in either case, for the mind the body is only temporary. And this brings a relief to me. Whatever happens to me physically, I won’t be carrying it forever.

I think of all the others, sick like me, dreaming and hoping and feeling desires like the rest. It’s strange how our indignant heads are alive and full, swirling with ideas and goals just as though we had a body that could serve them all–make them all come to light. But at present time we don’t. So call us “alive” and say we “look well,” but know there is only a very small surface of which most the world sees. And the majority of life with this illness falls far below it, in a darkness underneath that very few see. Some can’t see it. Some don’t want to. Others just haven’t had the access.

It’s funny thinking about that word “alive.” Sure, we’re alive. But there’s an important difference between living and surviving. “Just getting by” physically, is hard to equate with living. And worlds away from thriving, which might be called a pretty commonly desired endgame. We, however, are hanging on by a thread, and it’s hard to call an existence like that “life” with any real conviction. It’s similar to hanging at the edge of a cliff and grasping it by one hand– would we really call that hiking?

That is the point where many ME/CFS patients are: hanging on with a half-steady grip, still breathing, still a beating heart inside, but stuck; Left with few options but, you know, to go on hanging there. It’s hard to have a social life or work a job or vacuum your living room when all of your mighty, tiny strength is being poured into hanging on to this cliff. It’s no wonder why so many people have it let go. There is just not enough hands at the top, not enough people offering help to pull you up, and no safety net at the bottom. And similarly, just as pulling a dangling body up off the edge of a cliff is a difficult but achievable task, a “problem” with more than one possible solution, curing the disease that has millions of people hanging by their own one or two threads is equally obtainable. It’s just to a larger degree. But it’s far from Impossible. And it would involve a few similar tactics: some people at the top, those say, for whom walking and standing is not a great feat, and who themselves are not also hanging off the edge of a cliff, combining their efforts and resources and intelligence and getting to work; finding a solution, in this case a cure.

Never having the experience of rescuing a person dangling off the side of a high-up something or other, I imagine that a rescue is within the realm of human capability. There are many ways to go about it, and maybe I’m being sort of dense here, but I’d venture it basically comes down to people lowering themselves to the ground, extending their arms to the dangling human, and with a great amount of strength pulling the person up until he’s back on his feet. And while maybe the tactic is basic, the act itself requires a solid effort. Lifting a person from this particular state is like trying to maneuver deadweight– Much easier to carry a body which is alive even if incapacitated, than one that’s dead and stiff. I’d like to emphasize that I’ve never hauled a dead body around but I’ve tended to my share of drunk friends who had 6 too many, and it would take 3 of us just to get the person, alive with a LOT to say about the world and true friendship, into a car. The very obvious point is, saving the person who’s still hanging there off the edge while I write this, is a very doable thing. And I know I’m comparing apples to oranges, or apples to bowling balls, but I believe with every part of me that this issue of solving or at least better managing this disease has never been on account of inability. This is something we can do, we’ve simply chosen not to based on some very obtuse, very lacking scattered pieces of information that cannot be labeled as facts.

Me, I can’t rescue the hangers on the ledge. Of course I can’t, I am one. But therein lies the kind of rescue I can provide. I can hang off the ledge next to you. Because there is something undeniably comforting in knowing that whatever struggle you find yourself facing, that you’re not in it alone, and that others are in the same boat. Or off the same ledge as it were. Like I mentioned, you can’t do a lot while devoting all your energy into grasping your spot on the mountain and not letting go. I can’t march in front of congress demanding to be seen, nor can I carry out the hundreds of other ideas I have that I think could make a difference, could help change the state of things in a positive and progressive way. But I can do a little. And thanks to modern times, maybe my little could turn into a lot. As I write this, I am laying down in a dim room in my moms bed. I have a frozen ice pack on my forehead and around my neck, with a hot pack at my feet under the covers to help draw away the blood from my head, which is throbbing like always. And yet I am still able to write, thank you very much Steve Jobs, on this rectangular dense brick otherwise known as my phone. It’s often hard to sit up comfortably with the computer in my lap and so being able to jot everything down from just a small device is kind of a miracle. Very often, while either FaceTiming with my niece or buying dog food from my phone that will be at my door tomorrow, I this is it-we’ve arrived at the future. And yet, I don’t even know how a calculator works.

The point is, healthy or functioning or bedridden or whatever, there are little things we can all do, in our own way, that can help change things. And yes I hear how corny that phrase played out. Recently I watched an interview with an author and Benedictine Nun named Sister Joan D. Chittister. She was really inspiring to watch. An author of over fifty books, she writes about about many topics including spirituality, women in the church, and social justice. She is clearly leaving an amazing footprint on the world through her written and continued community work and is firing up others to do the same. She said she is often asked by people “What can I do to help change things.. To fulfill humanity or to better the world?” Her answer is very stripped down. “Something.” And her brilliance was immediately illuminated in her acknowledgment that speaking up for a friend is as big as a March on Washington. “Just do something. Wherever you are with whatever you’ve got. When you see an injustice or see something that needs changing, do something. It doesn’t matter how small, just do something.” Of course this answer resonated with me. I often get discouraged about the state of things concerning the disease and the state of my life and all the change I wish I could make happen but physically I am unable to. But I forget that small changes, small acts can have huge impacts when carried out diligently. I have so many big ideas, big dreams that I hope to achieve one day. But I also have to remember that one day is now, and it’s probably better to focus on what I can do today, as I am and with the resources I have now. And I think putting in the work that might feel small, that isn’t NY Times worthy, doesn’t mean it lacks the chance to make a difference. There’s a feeling you get when you pour yourself into something you care about, that seems to carry out a mission from deep inside you, even if you don’t know what that is exactly. I get that feeling every time I sit (or lay) down to write. I may not know for a long time what the role of all this is or how it will play out in the larger context of things later on down the line. I just know it’s what I can do now. It’s my something, so I’ve got to keep at it.

It’s been a pretty sick and trying few weeks for me, and I feel often that accessible moment of how easy it would be to just throw in the towel, or to become hardened by the relentlessness of the experience, but I want to remind the other hangers on the edge out there to hold tight, because not only are there rare gifts to find within all this, things will change. They have already begun to. Today will become tomorrow. And one day soon enough, this will all be a memory of something that yes, didn’t kill us and made us stronger. Hang in there. Hang on. It is going to get better.

Health, Happiness, Cliffhangers 

Adjusting the Perspective on Pain

What is it about Winter?

Post-Holiday Winter, I should specify. It’s wearing on me. Draining and uneventful, this window of time moves so slowly it all starts to feel static. The date keeps changing but there’s nothing I can point to as proof of time passing. When I think back on it, this “leftover winter” has gotten me down in the past, too. It reminds me of the day after a night of drinking in college–hungover days where things on the outside are idle but there’s some invisible pressure that I ought to be doing something, anything, other than what I’m doing right now. But what that thing is I can never name. It may not even exist. I hold the colorless weather outside at least partially accountable. Winter is haphazard in New Orleans. Nothing sticks long enough to adapt a routine or wardrobe to. It goes from freezing and wet one day to weirdly humid and warm the next, but something about the sky, the whole atmosphere out there–it’s this oatmeal-hued environment that either mimics my insides or my insides start to mimic, and for whatever reason the affect is restless and un-motivating. It feels like weather that’s waiting on something and the ansi-ness rubs off on me. Then I find myself in this counterintuitive disposition of mostly-optimistic anticipation that something of note is going to happen in my life, mixed with that physically paralyzing effect that comes with a heart-ache depression. It’s like I’m sitting in a car all packed and ready to embark on some adventure with road-trip snacks (Gardettos) and a map, but there isn’t any gas in the car. So I just sit in the driveway, snacking on Gardettos.

One of the more confusing results of all this is that I can’t tell what direction I’m moving in. I realize that life and time pass in one way only, but somehow I don’t feel like I’m moving forward. Things are feeling stagnant mostly. And on really tough days they feel backward, a distorted Ground Hogs Day reality where I’m living one day over and over but I’m doing it worse than the day before. I notice during times like these, Oatmeal Winter and Illness at the Helm, one day can easily feel exactly like the one before it, and when I think too long on it, I can’t totally distinguish between the two. Or three or four. Of course it’s pretty easy for me to point my finger at the weather while this other important truth remains that I’m really sick right now–that I’ve been really sick since that crash the day after Thanksgiving and I haven’t really been able to recover. I guess sunny or not, this will get anyone down, even the most seasoned of sick people.

Being sick for months at a time poses an interesting creative challenge. Since you can’t often achieve a change in scenery, which is a widely agreed-upon method to upping ones mood, you have to find ways to see yourself and the world around you in different ways and with new eyes. This is really hard to do. Especially since there’s been such a distinct and relentless sameness to everything given the weather and my health and yada yada. It probably explains why I chopped eight inches off my hair, which helped, actually. But consciously I realize that becoming bored by your surroundings and state of being stems from a lack of proper perspective, and not a failure on the part of the universe to remain exciting. Everything around us is constantly changing, if even at a rate that is undetectable by our human eyes, and every day we wake up and live through is completely unique, never once experienced until now and impossible to ever be duplicated again. When I think about the fact that you never get to live the same day twice, it’s actually a comforting thought. Usually when I feel that I’m in some time warp with my struggles or misery or boredom on repeat, it’s because my vision has narrowed far too much and I’ve lost the horizon from my line of sight. Marc Nepo says “It’s the giving over to smallness that opens us to misery,” and I think that applies here. He says later “Misery is a moment of suffering allowed to become everything.” What a truth bomb. I think I read that line five more times after I underlined it twice. I know that when my focus zooms in purely on what is hard, the scope of my experience is cut in half, at least. This is why gratitude as I’ve come to understand and cultivate it is so immensely powerful. It wisely keeps and protects the good things in your life within your consciousness, within your line of sight. And it’s so incredibly true that the times when I am most unhappy, I’ve become lazy about remembering what I have, which is a lot. It’s not to say you can’t be conscious about the hard things or honest that they’re challenging or depressing. If you don’t express acknowledge these truths, the gratitude doesn’t have a chance to be authentic either. You have to be honest about both. But that’s the key, acknowledging one without forgetting the other. Grasping them both helps keep a broader and more accurate picture of your life within view.

Maybe this is a bit of what Nepo means when he talks about being a Spiritual Warrior–which sounds fancy but is definitively humble.

“All Spiritual Warriors have a broken heart–alas must have a broken heart–because it is only through the break that the wonder and mysteries of life can enter us. What does it mean to be a spiritual warrior? It is far from being a soldier, but more the sincerity with which a soul faces itself in a daily way. It is this courage to be authentic that keeps us strong enough to withstand the heartbreak through which enlightenment can occur.”

This was both comforting and angering to me. Angering because I think, why can’t the enlightenment come through cracks that aren’t caused by heartbreak and struggle? But this is a larger philosophical point. I think a more evolved species will be capable of this in the future–achieving higher consciousness and peace and gratitude without having to endure loss or pain or heartache to see it. But at this point within human evolution, our condition is still adapting. We haven’t caught on to the larger things yet as a whole. Think how bad we’re still blowing it. As removed as I feel from some of the real evils of the world and humanity, I don’t have to look very hard or long to see humankind missing the mark, in big and small ways, all around me, and that includes me and the seemingly petty ways I do this in my own life. Just because I can point my finger at ISIS and project all the evil onto them doesn’t make me superiorly more virtuous. What we see around the world are manifestations of evil that exist, if even dormant, within all of us. But I’ve wandered off-road again.

What’s comforting in Nepo’s words is knowing that our work ultimately is to become who we are at our center. And it’s funny how simple this task appears but how insanely hard and rare real authenticity is–being honest about our weaknesses, our beliefs, our limits, our expectations…It’s not as easy as I’d hope. And yet any time I face a truth about myself that for a long time I either hid or denied, I always feel stronger after having confronted it or shared it with someone I love. Even admitting the extent to which I was/am sick and the limits it places on my life is a challenge, even though totally obvious to an outsider.  And I think this is why authenticity is such an important ingredient he includes in being a warrior–I don’t think it means knowing exactly who you are at all times, if anything this search feels like long–maybe it’s more the reverse: slowing peeling away who we aren’t until we become condensed, perfect little vessels of our true self. I think he’s also alluding to the idea that you can’t be conscious and inauthentic at the same time, and since ultimately we’re seeking whole consciousness, it requires in small ways along the path to acknowledge and cultivate the true self, while diminishing the layers that are not real.

The reason it angers me is because this formula is what I confront when reading all the spiritual masters and mystics and artists for thousands of years, and so it’s a clear truth that has persisted through the centuries–that it’s through hardship and pain that human beings seem to achieve deeper consciousness. Or at least, it is through this pain or suffering that we have the opportunity to grow and evolve consciously. It’s very easy to use pain as a reason to stop trying, and I’ve certainly done that a good number of times. But the most amazing people, those who seem to get it, those who appear to be made of peace on the inside and who exude joy outwardly and live their lives with creativity and virtue and light-heartedness, are not people who were given easy lives and thus are happy. They have all endured exceptional pain in their own ways, and have all found a way to use their most challenging of experiences to propel them forward, up, larger than their circumstances. The pain is still real inside of them, accessible and observable even to those on the outside–its not that they eradicated it, but somehow turned it into the material that would make their life good, whole. (See an amazing example of that here)  They didn’t eliminate it, but they also didn’t use so much of it that their life was made up purely of struggle. This is another exploitation that’s easy to pursue with ones pain– using it as a platform for identity. The point, obviously, is not to become the pain, if we’re trying to transcend it. Wallowing in our own web of misery is an easy way to garner an audience but also to never evolve. To avoid consciousness. What I was trying to say when I began this thought of why this truth angered me, is that I wish human consciousness could evolve in easier ways than through pain. Of course, there are many other teachers that develop our soul and psyche, love namely, that aren’t as challenging as say something like, an invisible disease that pulls the rug out from under you. Everyday. :) But the truth is, the things which have taught me the most, shown me the gamut of human emotion and contributed to further compassion, kindness, capacity to love and ultimately consciousness on my end, have been these very deeply painful and trying experiences. And so I know that it’s true. And I know it’s vitally important what you choose to do with your pain or heartache, because not working to put it toward growth, gives it the power to swallow you up whole. It takes away from you, gives you a reason to be bad, to stop trying, to give up on the world. And that’s the truth– I say it because I’ve felt these things in the past in reaction to the tough experiences in my life, not always directly after they happened either. I still struggle with it. And it haunts me how easy it is to let those experiences take the wheel and drive me to unhappy places. Luckily we’re not powerless to pain. We have choices to make.

In a different way, using the pain to define your self, or wallowing around in it but never moving on from it is another struggle that I have to stay keenly aware of. I have a whole blog that is named after a damn disease that I am also trying hard to not let define me. It’s a huge part of my life and my story, but I have to keep it from growing so large that it takes up my whole view. I don’t want illness to be my only avenue for expression or creativity, and I definitely don’t want the art and work that I do pursue in the name of it to be all sad or negative or heartbreaking. Of course this isn’t always easy to do either, because writing about your health good, bad, or ugly, is naturally going to include parts that are bad and/or ugly. There is a lot of that in a life with illness. And my point when I began this project so long ago was to accurately portray what life with chronic illness actually looked like, since I’d confronted so many misunderstandings and false beliefs about it from people in my own life. Obviously some writing stems from hard days and dark feelings, and if you’re going to tell the truth, tell the truth. The point was to have a space where I could be honest and not polite for the sake of peoples small-talk comfort. BUT, the point I have to keep in mind is that illness is just one part of my life, and while it can feel like it defines so much of what I do, it is still just a part, but requires me to keep it right-sized. It’s only when my perspective zeros in on it do I lose the whole horizon, which are the amazing people in my life that I love so much and who love me back, the incredible house I live in, how happy my dog makes me every time I look at him, how lucky I am that I was given the gift of writing and this is one thing the illness hasn’t taken from at all. In fact, it’s what gave me a voice on this very medium. Hey look at that, the clouds are parting.

Winters are tough. They seem to be that way for a lot of people, North or South, sick or well. It’s easy to look around and see the same thing everywhere you look, because details are small and we’re usually too busy or too certain to stop and look twice or three times at things before we see the wonder in them. I know that during times like these, my life becomes very small because when you’re sick and weak like this, you’re constantly breaking everything down into smaller pieces so you can digest and complete them. You know how during hard times people will say “Just one day at a time”? Well during days like this, it’s really more down to a moment by moment basis. Mostly because each tiny little movement requires so much more from you than normal. It astonishes me how hard the simplest of tasks become when your body feels like it’s made of lead glued together with honey. It’s not just Wake up and make the coffee! It’s OK, sit up in bed. Ready? 1, 2, 3, sit up. Why didn’t you sit up? Try again 1, 2, 3. Come on, you can do it, just a little more, OK! You did it! We’re sitting up. Now, turn to the side to put your feet on the floor and stand up slowly. Feet on the floor, ready? Here we go. OK, feet are on the floor. Time to stand up. Heeeeere we go, and we’re dizzy we’re sitting back down again. OK, catch your breath. Breathe slowly. Calm down heart, all we’re doing is standing here. OK, try again on 3, rise slowly this time. Ready? 1, 2, 3 and we’re going to stand up. 1, 2, 3, we’re standing! Now, 12 steps to the kitchen, you got this, 1…2…3…

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The kitchen is super close to the living room and my couch, and so sometimes I have to make a stop-off there first, which is perfectly portrayed in this cartoon by another blogger with CFS. 

Anyway, notice the minuteness of each of those moves? I’m not exaggerating. This is simply what Bone Crushing Weakness does. Tasks this small shouldn’t require being talked through like you’re in a danged boxing match. But what can I say, it must be evolving some part of me so I can be the best of the best Spiritual Warriors ! Or just a normal 31 year old who gets out of bed. Either way. I think it’s this breaking down of things so they are doable is also what makes life feel so un-doable sometimes, because it all feels too big, too much, too long. Like I’ll never be able to get on top of things. But I know it’s because my vision is off and I have to be proactive about seeing my life and even these sometimes painstakingly long days against the larger backdrop of the world, of eternity, of the whole web of human existence. I find relief in seeing my life as a small spec within the largeness of our universe. I didn’t always feel that way, but now I know it means that enduring challenges come to an end. It means I am just one of many kajillion working parts and lives. It means that while not everything is up to me, the essential parts are, and I’m here because I’m capable of achieving them. I have to remember that as much as I can convince myself and be successful about it, I am not alone. That thought isn’t real. And my life is not impossible. And all of this, including colorless winter skies and lacking motivation and bone crushing weakness, will end. And I’ll look back on it one day, as the pain that moved me forward and opened the door for great things to happen, not as a shit show that ruined what could have been a good life.

Health, Happiness, Perspective

P.S. If you want to see one incredible example of taking tragedy and hardship and turning it into Greatness, watch Mayou Angelou share her life story on Master Class. It’s one of the most inspiring things I’ve seen, ever. http://cms.springboardplatform.com/previews/3405/video/937187/sfta001/

Getting Clean

I really, really need to bathe. Let’s start there.

Why don’t you take a bath Mary? Great question. I’m running on fumes, that’s why. I’m not just low on energy but also have that Bone Crushing Weakness going on, and it turns out the whole “cleaning-up” process requires much more exertion than you’d think. And you wouldn’t think about, because it’s not something you think about when you’re well. When you  have a steady supply of energy on tap. A shower is just a precursor task on your way to doing other things. When you’re chronically ill, showering becomes the thing.There is no after. No next. To Do List: Bathe. End of to do list.

Not until I was at the mercy of illness did I understand the physical toll of hygiene and general appearance. This is mostly the reason that  when I’m not out in public, I look like a deranged, color-blind Craigslist Killer. Just to give you an idea, besides my obvious and immediate desperation for a bath, I am currently wearing these green-striped pajama bottoms with mis-matched socks and a Hanes His Way V-Neck white t-shirt. This is actually one of my more cohesive looks, except that I ate a pomegranate last night and the dark crimson juice has splattered all across my chest. Did that motivate me to change my shirt? No. So now not only am I dangerously close to exceeding the point of no return in terms of lost humanity due to lack of cleanliness, but I also look like I’ve been bleeding, or that I made someone else bleed, which adds a concerning urgency to whatever it is I have going on right now, but I still can’t be bothered enough to do anything about it. So I just go on living my life and all this has really upped my game in terms of just how insane I can look on a Wednesday without really trying at all. Some would call that impressive! Anyway, I’d love nothing more than to do my laundry and my hair and alphabetize my life and put on a dress just for fun, but I can’t. Not at the moment. And it still surprises me how seemingly simple and small things start to become large and exhaustive, all on account of health. Not until you’re straining to stand at the sink and overwhelmed by the exhaustion you feel just having to move your tooth-brush up and down, or discover that your arms and hands have turned to rubber after using them to lather up the shampoo in your hair, does it hit you just how costly all these little moves are. Not until the smallness of previous, everyday tasks suddenly reveal their enormity do you fully appreciate how much exertion it takes just tending to this business of being alive– and this is before you even go anywhere or do anything! It’s silly really. Still, this does not change the fact that I really need a bath and if I go one more day without one I fear I’ll reach an irreversible state of unclean and I’ll never get it back. I’m also sort of hoping that by sharing this very inappropriate and vulnerable reality with perfect strangers and a few friends on the internet, that perhaps it will motivate me, give me that final ‘push’ to take the plunge, even though my whole body feels like the human equivalent of mashed potatoes. Mashed potatoes with death gravy!

I open with this unremarkable and embarrassing truth about my life because I think I’ve become a little too serious about the outcome of my writing in the last year or two and I’m trying to remember the importance of light-heartedness. And humor. I’ve noticed I put an extreme amount of pressure on myself to produce posts that are equivalent to biblical scripture, instead of remembering that this is a blog, a documentation of a small silly life, and it doesn’t always have to read one way or another. I find that way too often the writing doesn’t meet my expectation–which isn’t even anything specific, it’s simply a personal note of “It could be better.” As a result, I scrap a lot of work, I start over, or I just abandon it halfway thru. This is not a smart or productive way to go about any art, so I’m going to try to stop doing that and also remember to have fun. Oh yeah, fun! I forgot about fun! Usually the things I really enjoy writing are the things that people enjoy reading the most. It always translates. Too often it feels like extremely tedious work, which I think it has to be sometimes, especially if you want to always be improving the quality of your work, but more often it should just feel good. There should be some amount of recreation in it–this is my passion after all. I do it because I like it and it makes me better. Too often the process feels like taxes. So, I’m trying to remember to enjoy the process and the outcome, and also that not every word I write has to be a thought-provoking useable quote to put by my name after I die. “I need to bathe.” -M Gelpi, 1984-2016.

It’s been kind of a stupid few days. For one thing, I’ve bit my top lip no less than four times while eating. It frustrates me that my mouth is this stupid and that it doesn’t learn the lesson faster. Is it really so hard to GET OUT OF THE WAY. I think, I am 31 now, I shouldn’t have to explain to my gums that hey, when there’s food in my mouth and my teeth are moving up and down? Do you think maybe you could stay out of the way? Not a big deal or anything I just don’t want to EAT CHUNKS OF YOU and also I don’t like the taste of blood. With anything. So maybe stay clear of my teeth now? Great thank you. Glad we had that totally necessary talk. Now maybe I’ll tell my head to stay out of the way of my fist when I’m punching stuff! Hah, who am I kidding, I’m too weak to punch things!

What else? Oh yeah, I’m starving. I never mentioned this before but I’ve been battling an addiction for a few years now: it’s sugar. It’s very real!! So I basically eliminated all processed sugar as of Sunday, and it’s getting easier I guess. But even it being easier doesn’t change that it’s still ridiculously hard. And half the time I think the answer is, don’t diet. If you’re addicted to sugar, just stay addicted. Get fat. Get diabetes. Die young. This isn’t worth it. A cupcake would make me so happy right now, why am I denying myself this easy promise of happiness? Why am I making life this much harder on myself? Kiddingggg. But truly, I was addicted. Am? I think I still am, I’m just not feeding the beast. It began shortly after I began the corticosteroids–my appetite, my cravings for sugar, and my intolerance for it all simultaneously exploded at the same time and only got worse with time. I also became extremely hypoglycemic and would wake up in the middle of the night starving and shaking. I knew at some point I would have to do something drastic, not just because I was clearly addicted to something I didn’t even used to like, but my body was also rejecting the very thing my brain was craving. So many of my migraines occur after eating something sweet, typically processed sugar. Not to mention, there is just way too much junk in my trunk now. And also under the hood, and the front and back seats. Mostly, I just feel totally out of balance. I don’t like my relationship with food anymore. I used to just eat when I was hungry and then not really think about it. This whole sweet tooth thing is exhausting and also never-ending. I literally never feel full and I’m bored thinking about it all the time. So it was time to quit. Right now I’m just trying to get used to feeling mild hunger or major cravings but not immediately shoving food in my mouth as a response. Especially when I’ve already eaten a healthy meal and I know I’m not actually hungry. It sort of struck me, this totally 1st world moment of enlightenment: Oh yeah, I don’t actually HAVE to eat just because I feel hungry. I literally forgot that I have that option: NOT eating. Only an American would forget this, I’m convinced. So that’s going well. Wait no actually it’s really hard and taking a major adjustment but whatever, it’s in the name of being healthier and I can get behind that.

This morning, I was lying in bed and trying to find the motivation to get out of it, my eyes scanning the room looking for something inspiring to land on. Window. Wall. Dresser. Monty! Then I thought hey, I’ll just lay here and talk to Monty. Sometimes I share my ideas out loud with Monty because NOT EVERYBODY HAS A BOO WHO WANTS TO HEAR THEIR COOL TAKES ON LIFE. And I was like Monty, don’t you think it’s kinda dumb how hard life is? I mean if we were talking about Life Round 2, like if this one were a dress rehearsal, I would pull for “Less hard stuff, more funny stuff” in the next one. I just think the script is calling for more humor, more casual fun. It’s like the architect of the universe was listening to a playlist and when he got to this part, Coldplay got stuck on repeat and so there was a somberness infused into the day-to-day to stuff. He needs to listen to Pharell, or better yet, the band Fun! They would mix it up in a positive way, I think.  And I’m sharing this with Monty thinking this is pretty good stuff, and what does Monty do? But abruptly start licking his butthole. As if the house was going to collapse on top of us both if he didn’t do it at that exact moment. Right in the middle of my Ted Talk (more like BED TALK) about how life should be tweaked for the next go around. At first I was like OH REAL NICE MONTY but then I was like God, who am I to make you feel bad about this? It’s probably the shitty food I give you making your butt itch, even though it’s expensive as shit. This country has major food problems, for dogs and people! Whatever I mean that’s what they say.. I don’t really know anything about it.

I’ve been writing this dedication piece on gratitude because despite my life looking and sounding like a disaster, it’s actually great in a lot of ways and has some really amazing parts and people that I am crazy grateful for. I’ve been writing it for weeks, in my normal tortured way, and there’s some good stuff there, but I think I just need to calm down. The piece is not just about saying thank you to the many, many people who have reached out and offered help to me in so many different ways this year, even though they are who inspired the piece. It’s more about the new and intimate way I’ve come to understand and appreciate gratitude in my life, which began with me recognizing gratitude during parts of my life that I wouldn’t traditionally say thank you for. There were extremely tough moments, days, and months this year. And yet somehow, there would be these redemptive moments within the pain, where I felt grateful for the exact experience, even if it wasn’t enjoyable or was causing me pain. This was never traditionally my approach to gratitude. I said thank you when I recognized that something was good, and there were always plenty of good things. But there was a whole new light shed this year, particularly during this winter which has been challenging in a number of ways, and yet the struggles still managed to produce these amazing moments of love, kindness, help, laughter, friendship..all in the midst of what I’d normally consider “disaster.” I write about it because I am continually surprised and amazed when I feel gratitude sneak up on me inside–I’ve been blown away by its reliability regardless of whatever scenario I find myself in. It was always easy to say thank you when everything went my way. But it’s been a new and enlightening experience stumbling upon it even when I’m lost or isolated or feeling totally discouraged. That’s changed how I look at everything now, and it really lightens the burden of whatever I’m carrying when I remember to try and find it. Anyway, that’s what the piece is about. Hopefully my brain will stop screwing around and I’ll get it cranked out sooner than later.

In the meantime I want to say that while I don’t always feel worthy of the love, help, gifts, messages and prayers that are offered to me by so many people, I do constantly feel incredibly grateful for the support that me and those who care for me have been given. Every way I’ve been helped or encouraged, no matter how small it may have seemed, always presses me to be better and to try harder. All we can do is our best, but being loved and supported the way I have continues to raise the bar for what my best can be. Thank you! All of you. My life is a perfect example of how needing help can be a really beautiful thing and not something to be afraid of — it teaches me to trust in humanity and to humbly surrender and accept what I can’t control, and I think to the giver, it teaches grace and encourages kindness. Somewhere in the middle is gratitude for us both.

I think I feel encouraged and insecure enough now that I’m going to attempt to bathe. Thank you for helping me.

Health, Happiness, Hygiene